Limbo

The vultures are circling overhead...wings spread wide as they soar, waiting...We're all waiting...Waiting for the now inevitable phone call. Every time the home phone rings, my breathing stops and I wait, listening for something...anything, but silence.

My mother-in-law is dying and it's one of the most unsettling realities I've dealt with. I can't completely wrap my head around how Dan must feel, or my in-laws for that matter. While she's very much a part of my life, and someone I love dearly, I'm still on the outside just a hair, yet close enough that tears fill my eyes when I think about it and I quietly run through how we will break the news to Cole on a regular basis. We live in limbo waiting for the call. Tensions are running high...and there's nothing to be done...yet...we simply wait.

The Wait...

The wait is the hardest part...so the song says...



Sometimes the moments leading up to an event can be so excruciatingly driven by anticpation that the moment passes before you look up to notice. Other times, the anguish of the anticpation is disapaited by the success of the event, the breath you take as you walk into a room and realize you have all of your clothes on and a spinach free smile. And yet other events are marked by the tragedy of time moving us in different directions while our hearts hold onto the memories of the past, of what once was.



I saw someone I love dearly after several years out of touch. There was a great amount of anxiety built into the meeting. There was joy at the prospect of reconnecting with a beloved friend, and ultimately sorrow at the distance the years put between us, between where we once shared common ground, and now lead vastly different lives. The tug of the affection that we share bonds us forever but I felt such a sense of disconnect even as we hugged and were genuinely happy to see one another. I left, my walk weighted by the sadness...

Surfing Boys

I've always liked boys who surf...I've always wanted to learn to surf...I don't know why I never have. I spent years hanging out with people who could have, would happily, taught me...I think when I was younger and more insecure, I was afraid to ask, afraid to not be good at it, afraid to look foolish? I don't know...But by and large, I've always found that boys who surf are generally pretty cool guys...

And this past Saturday, it was never more evident...A mom at our school who I met this summer generously included Cole in an event that was part of the Malibu Invitational surf competition. Thera-Surf is a program where physical therapy is combined with surfing. The surfing component comes from Kim and her boyfriend, a known surfer, Jimmy Gamboa. He got several other pro or really terrific surfers to volunteer their time and expertise to take out eight children with varied needs. Cole was the only first timer...He has wanted to go surfing for about five years. We've dreamed of this kind of program and fantasized about trying to create one for years...Kim, Jimmy and a PT professor at CSUN actually did it! And they're amazing.

Cole was a little nervous - perhaps nerves and over excitement...When we first arrived at the beach he just sat and sort of checked out everything. The competition was going on and the announcers were chatting and a lot of activity going on around the beach with the different sponsors and vendors and teams...We met some of the guys who would be taking the kids surfing and Cole seemed to relax...Then he got into his wetsuit and was off...

He surfed with Ryan Conder who also surfs with Surfer's Healing so he's had lots of experience with kids...He paddled out with Cole on the front of his long yellow board until they were but a speck in the sea...They waited their turn and for a good wave and were off...Ryan stood up first, then pulled Cole to his feet and they rode the waves...Cole's little feet danced on the board and I can only imagine the size of his smile! They had three great rides...and Cole's ready for the next time...

Standing on the shore with all of the other parents, spectators and surfers cheering for our children was joyous. The guys who gave their time to do this have no idea how much they are appreciated and now a part of the weave of our lives. One of Cole's dreams came true yesterday...It became a reality...and something he'll be able to do again and again. He's joined the ranks of the cool surfers...

So you had a bad day...

Or week...

For whatever reason, the logic in my life tends to be that when Dan is away, things go wrong. Last spring the electricity went out when he was in Cannes and had to be rewired. Later that year while he was in Toronto the bathtub nozzle broke somehow and the water couldn't be turned off...Another year the airconditioner died in 100+ degree weather. And then just the little things like the car overheating on the 405 at rush hour and pneumonia taking Cole and I down for two weeks of missed work...And none of it's Dan's fault and there's nothing he can do about any of but it just all seems to happen when he's away. I feel like Schleprock...

I'm having a bad week...nothing seems to be cooperating and there seems to be too much that needs my atttention and not enough of my attention to go around. I'm driving an average of three hours every day just on the commute to and from work/summer school. It's hot even in the evenings and I'm pretty sick of myself at this point.

I've developed a whole new appreciation (on top of the respect I already had) for single parents. It's fucking hard and there's just no down time...no such thing as "me" time, especially when you have a 24/7 child like mine. There's just not that "go entertain yourself for a little while so mommy can breathe" moment...And I know he'd love to do just that so it feels unfair to even mention it...I know he'd help me with anything I needed. And for that, the smile returns and I am reminded of how lucky I am that this is only temporary and that things can be fixed, traffic will flow again one day (okay, maybe not that, I do live in LA after all), and there's the boy and the beginning and end of my day who loves me...

Fever

Fever seems to have taken over my life during the past two weeks. It started two Mondays ago with Cole going from normal to 103.5 in about ten minutes...and it hasn't stopped. He's had pneumonia, an upper respitory infection and two ear infections during the past 14 days and I've had the pneumonia and upper respitory...Maybe the ears but I never checked. With the exeception of a residual cough, I'm well on my way to being healthy. We've had the quietest, dullest days these weeks and yet before bed last night the boy felt warm..100.4, cool bath and Tylenol, off to bed and he wakes with 101.1! I don't get it. He's congested again and achey...It's back to the doctor tomorrow even though summer school starts tomorrow and I desperately have to get back to work...Working from home is just not the same...I can be productive but there's just something so nice about being amongst my coworkers and interacting that makes it seem more productive at the office. Let's all cross our fingers that it's just an ear and not something worse...Fever...when you kiss me, fever all through the night...

My Time

I've had the whole morning to myself...some of the afternoon...I left before Dan took Cole to horseback riding to attend my 2nd Weight Watchers meeting (from now to be known as WW if I ever mention it). Yes, I've finally made the decision to lose the excess emotional baggage I've been carrying around for the past decade and thought some help might be a good idea. Down 2.2 my first week...not bad considering it was a crazy week and nothing really worked out the way it was supposed to. So after that, I leisurely ran errands and did some house puttering. I can't remember when I've had six hours to myself and frankly, I didn't quite know what to do with it. I should savor it since I'll be on my own for much of the summer while Dan's shooting a movie in Baltimore. It will be a busy, hectic summer for all three of us. Cole's doing summer school, a drama camp (they'll put on Newsies at the end) and then four weeks at a real old fashioned summer camp where they'll swim, hike, do archery, arts & crafts, gymnastics, soccer, some game called GaGa that he's very excited about, and more. What I imagine the idyllic summer camp experience to be...I'll be working and Dan'll have long days making the movie...He grew up in Baltimore so it should be a pretty fun time between the hard work. A different summer for us but hopefully a good one. Now I'm tired and wishing my time wasn't almost up. The boys are bowling with one of Cole's teachers but due to be back in just a few minutes. Part of me feels like I should have gone for a massage or yoga or something but the other part feels reasonably satisfied that a lot of running around was successful and that I don't have to drag Cole around to do lame, necessary errands...Perhaps I'll have a quick up of tea and curl up with a book until they're back...hmm

He's not me...

The boy is sick again...Just a cold/flu fever thing...but congested enough to keep him up and witha sore throat that makes him prefer to spit instead of swallow...Dan picked him up from school yesterday with a sore throat and is staying home with him today. It felt so strange to leave the house with Cole there not feeling well. It's the first time in seven odd years that I've had to do that. I felt a twinge of nerves from Dan, not because he's not an amazing dad who is completely capable of taking care of the boy, but because he's simply not me, and because his efforts will be made more difficult because of it. He, in fact, often proves to be more attentive to Cole's needs, but it doesn't often matter. I feel for him. I see how frustrating it is and even disheartening. I wish there was something I could do about it but Cole's got his mind set and even when he's frustrated or angry with me, it's still me he craves. So I'm here at work feeling badly that I'm not home, feeling badly that Dan's missing work, feeling badly that Cole might be giving him a hard time...

I'm tucked inside a cubby hole

A cubby I call my office...It's my first experience with the dreaded "not really an office" office. Modular dividers...I'm quickly becoming crowded with binders, books, files, and piles of loose papers. Photos clutter the nubby push pin wall, along with memorabilia designed to make me look both cool and interesting. Privacy doesn't exist when your office is open and in the middle of the entire office space. Your conversations are easily overheard, although you can hear your coworkers just as easily so there's the bonus of selective voyerism. I frequently, nearly always, eat at my desk which is awkward at best. And yet somehow, I've grown accustomed to being on display. And I find myself wondering if this is how zoo animals feel, being watched constantly during every hour of the day?

MAPS for Cole

Friday we particpated in a MAPS Personal Assessment for Cole at his school. One of his teachers is working on her masters and wanted to do the assessment for Cole. It's typically done when children are a bit older but she, very insightfully, thought it could be really beneficial to do one now. She and Cole planned the day. They invited friends he selected, family members and teachers, therapists, and even our principal, collectively, his Circle of Friends. The atmostphere was almost party-like with pizza and ice cream for all.

Prior to the event, Cole was asked to describe himself in terms of what he is: a son, friend, cousin, swimmer, bowler...Then we were all asked to share responses to several different questions: Who Cole is to us; what characteristics define Cole; what are our dreams for Cole; what are Cole's strengths; what are his needs, now & in the future. The responses were written out on big sheets of paper, one for each aspect and posted around the room. It was really amazing to hear what all of the different people had to share.

His teacher will then review and assess the responses and create a plan of action so to speak that will be used as a tool for mapping out Cole's future goals in school and in life. Most likely he will have another MAPS when he's a bit older, perhaps transitioning to middle school and we'll now have a wonderful baseline for next time. Plus it gives us an opportunity to start early in trying to help him reach every goal, wish and dream...It also occurs to me that the children who participated may not have fully understood the impact this will have but I suspect that in small ways their understanding, and appreciation of their dear friend Cole, has deepened, and that this will somehow translate into something special in their lives too.

Working Girl

Yes...that's me...a working girl! Three weeks in and fairly happy with the new gig. There's a ton of catch-up and a slight learning curve for me..In my former career I was the lead singer and now I'm the bass player or maybe lead guitar? I would pass on the work I'm now doing to someone else so while I am familiar with it on a strong level, I'm now having to become verse in the actual nuts & bolts of it...But I'm liking it and the days go by really quickly and the people I'm meeting are great and it's a relief to have a steady paycheck and most importantly, Cole is handling the changes he's had to make with grace.

He's now at school five days a week from 8:30 to 5:30...a long day for any child...Our home routine has streamlined and he's doing so well with everything which just makes it that much easier for me to not become a guilt ridden mom!

He's the top!!!

Juggling

I started a new job last week. The whole thing came up suddenly and then Friday night the offer came with a Monday start! Yikes...Of course, Dan left for two weeks in Berlin the same Monday...So, I accepted...figured out afterschool care for Cole and flew into crazy woman mode...I'm really good at that one! Naturally, Cole got sick midweek and I had to take a day off because I haven't figured out the sick day care plan...If Dan were home, he'd stay with him...The stress level rose and rose and then it all kind of evaporated...Everyone was understanding and Cole is getting better and he and I are on the road to developing a new evening routine...

The panic set in during the weekend before I started...I think that's how I operate...freak out over all of the what if's and then when the time comes for action, I'm actually pretty cool. Cole's defintely cool...He seems to effortlessly adapt to things once he's got a grasp of the who, what, where, when, why's...Oh, you're working ("want to see"...where I work...), and I get to stay at school late every day with my friends...(YAY!)...

The past ten days have flown by though...I haven't figured out how to juggle it all yet. I know it's possible because I have a great many friends who do it successfully and set a great example...I'm lucky too because I won't have juggle by myself...Dan'll be there catching things that fall and tossing them back up into the air...

The interesting thing I'm rediscovering is me...more to come on that one...

Scars

Tonight as I gave Cole his bath, I was feeling rather contemplative and as I washed and rinsed his little body, I took note of the various scars. He has lots of them. Many from his first few days when he struggled to stay alive and had tubing running circles around him. Desperate to have our hands on him in those early days, Dan and both learned to navigate the tubing and tape so that we could cradle him in our arms to comfort ourselves. We rose to the challenge of changing his diapers - not an easy feat when your child is wrapped in bondage! There are tiny little X's on the sides of his chest where chest tubes were inserted, and another little x on his neck where something entered, for medication, I think. Then there's a long slice down his stomach which was used to perform the surgery to initially insert his feeding tube so he could go home. He has two pairs of gashes on his legs and a pair of sort of knotted scars on his along his pelvis, all from an orthopedic surgery when he was four that lengthened his tendons and muscles to allow him more flexibility and to help prevent hip displacement, a common occurrence for people with cerebral palsy. He left the hospital following that surgery with a cut broom handle separating his casted legs at the ankles...very crude looking but I suppose it's effective as I've seen pictures of other kids who had the same surgery with the broom...The trouble with it was he didn't really fit through a door way with the broom...He, of course, took in all in stride and rode out the two weeks of casts like a champ...The last scar is one that I inflicted...and probably the one that haunts me the most...a little ding on his temple, right near his eye. I lost control of his wheelchair on a crazy sidewalk and the chair went over the curb and toppled before I could grab it. I remember it seeming like forever but it was mere seconds until I whipped the chair, Cole and all, back on it's wheels, unstrapped him, and had him in my arms...He didn't cry (I did), he just nestled into me as I struggled to stay calm. The only wound was a small scrape on his temple, by his eye. A little blood, but nothing serious. The scar makes it look like it was much more severe and reminds me daily of the day I hurt my baby...

Listening to myself ramble

Sometimes the one way conversations with Cole just leave me sad...I listen to myself ramble and wonder what he must think of me. Sometimes he seems to have no interest in conversation or communicating. I don't know if he simply needs some quiet or if he's being defiant, not responding to me or if he doesn't know how to respond to me. Other times, he's engaged and the chatter seems mutual.

While I would give my life for everything about him to be perfect, if one ability could miraculously be restored, I think I'd choose the ability to talk. There has never been a moment in Cole's life where I feel like I wasn't guessing what he wanted, felt, needed, or thought. There's no way to be 100 percent certain about it. I know I get it right a fair amount but I can't imagine how frustrating it must be for him to have the ability to think, feel and understand but to not be able to communicate exactly what it is you want. One day, as his skills with assistive technology become stronger and more adept, he'll come close...He'll never have the ability to readily articulate his thoughts or to, like his mother often does, ramble...

It breaks my heart...and I tire of my voice and ramblings...and I long to hear his voice...

Turn and face the strange...

Changes...

As I mentioned previously, I've become somewhat adverse to change...Perhaps that's not entirely accurate...I'm adverse to the process but not necessarily to the outcome. Much as I hate to admit, it's a note of aging...Big change now requires me to analyze (okay, overanalyze), digest, kick & scream and then finally accept...Where I once, occasionally to my detriment, would leap head first into change, I now think, think, think...While I know some of the consideration has to do with the fact that my decisions, changes, movements now effect more than just me. I have to factor what the changes will mean for Cole, for Dan, for our family. And in my current frantic fashion, I tend to land first on the downside...the buts, what if's, guilt, fear.

When I was younger, single, and yes, a bit dumber (less experienced?), I flew by the seat of my pants. Like most of us, I did what I wanted to do, what sounded exciting, interesting, challenging, daring, even frightening...I didn't often consider the consequences or outcome. I had a lot of great experiences as a result and got into trouble too. I admit it's an irresponsible way to live, and that it's a lifestyle one can only experience in one's youth (though I do know people into their 40's now who still maintain this somewhat hedonistic existence)...but sometimes, like today, when I'm grappling with even just the suggestion of a big change, I wish I had some of that fearlessness and (foolhardy) confidence...

Pretty soon now, you're gonna get older...

Time may change me...but I can't trace time...

Changes...

First of 2009

I've been negligent and now my brain is jumbled with too many thoughts going in too many directions. The year started off well. We were in the DC area for the New Year and for my MIL's 60th fete (which we helped pull together). So lovely...I had never been to DC and fell for Old Town Alexandria, where my in-laws now live. Really pretty and so different from suburbs of LA. The trip was great...Cole traveled well and had the best time with his grandparents. We returned the afternoon before school started back so things have just moved forward since then. Back to school, back to work, back to life...

Cole was pleased to be back at school. A kid can take only so much mom and dad without the diversion of friends, school and parentless activity to alleviate the mundane time with mom and dad...He's doing Mad Science and Sports afterschool this semester and may end staying afterschool everyday (I just interviewed for a full time gig so life may change for little family as quickly as next Monday!)...He's happy to be back. They're working on Biography Mobiles that they'll present to their classes next month. He has to interview someone who grew up differently than he has and design/decorate/etc. a mobile and presentation...Pretty cool stuff.

Dan's back to travel, leaving for Berlin Monday...And I'm still consulting but with a potential full time post in the works...We shall see. I interviewed this morning...and am now trying to catch up a bit from the weekend...Friday started with a playdate, then a sleepover Saturday and yet another playdate (movie date) on Sunday...In total, 6 different girls! (4 girls at the movie)...Who knew that 7 year old lotharios could be so very busy!

Though I am pleased to possibly have the option of a new, full time, secure job...I'm a bit freaked out about it too. I generally see myself as fairly flexible and spontaneous but I suspect that I'm not as much as I think! I'd have to start Monday, which brings about lots of changes for us, for Cole mostly in that he'll have to stay at after school care every day...I think the fact that Dan will be in Berlin when I'd start also factors into the nerves...and having to give up the flexibility I have as a consultant...but in these times, and with the inconsistency of consultanting, I'm thankful to have been considered...I suppose it will work out the way it's supposed to whether I worry or not...

So I'll choose not...